Question:

I’m trying to put together an asthma questionnaire and survey that will help asthmatics better understand their asthma, and in particular I’m trying to get a better sense of the important issues of asthma that doctors tend to miss, overlook or undervalue. I’d be very grateful if you would suggest answers to any or all of the following questions. Don’t feel you have to plough through every one if you feel strongly about only one or two: 1. What questions have doctors usually asked you about your asthma? 2. What questions have you been asked that really helped you and your doctor(s) understand your asthma better? 3. Are there any questions that you have never been asked that you think might be important? 4. If you could tell your doctor one or two things about your asthma that either you’ve never said, or you’ve said but perhaps weren’t taken as seriously as they should have been, what would you say? 5. Has your doctor made any recommendations for treating your asthma that you couldn’t follow? If so, what recommendations, and why were they so hard to do? 6. Is there anything that might make a difference to your health but is simply out of your control? 7. Do you think you know what brings on your asthma attacks? (a) sometimes (b) always (c) it is usually a mystery. 8. Do you trust your doctor? 9. Do you trust the medication that has been prescribed for you? 10. Would you like to tell me any particular story that illustrates your difficulty or frustration as an asthmatic? Thank you very much for your help. Please feel free to email me directly with questions or comments. Tim PS For those who want to know more about me before responding, I’ve written a book about asthma called CATCHING MY BREATH: AN ASTHMATIC EXPLORES HIS ILLNESS (Vintage Books). I think it’s on the alt.support.asthma FAQ or recommended books list. Tim Brookes   Department of English, University of Vermont PO Box 54030, Burlington, VT 05405 (w) (802) 656-4162 (h) (802) 878-2251 "If it was easy, it wouldn’t be interesting."

Response:

I’m trying to put together an asthma questionnaire and survey that will help asthmatics better understand their asthma, and in particular I’m trying to get a better sense of the important issues of asthma that doctors tend to miss, overlook or undervalue. I’d be very grateful if you would suggest answers to any or all of the following questions. Don’t feel you have to plough through every one if you feel strongly about only one or two:

Rather than answer a question, I would just like to make a comment.  I have always had the most trouble distinguishing between asthma and what my doctor calls "shortness of breath".  Sometimes I tell her that my asthma feels worse, the tightness in my chest is worse than usual and she says, "Oh that’s not asthma, it’s just shortness of breath."  I don’t understand the difference and that frustrates me.  Maybe if there was some way better to explain exactly what the difference is. Dianne

Response:

You’re right, that’s puzzling. Has your doctor ever explained the supposed difference? Tim Tim Brookes   Department of English, University of Vermont PO Box 54030, Burlington, VT 05405 (w) (802) 656-4162 (h) (802) 878-2251 "If it was easy, it wouldn’t be interesting." – Hide quoted text — Show quoted text – I’m trying to put together an asthma questionnaire and survey that will help asthmatics better understand their asthma, and in particular I’m trying to get a better sense of the important issues of asthma that doctors tend to miss, overlook or undervalue. I’d be very grateful if you would suggest answers to any or all of the following questions. Don’t feel you have to plough through every one if you feel strongly about only one or two: Rather than answer a question, I would just like to make a comment.  I have always had the most trouble distinguishing between asthma and what my doctor calls "shortness of breath".  Sometimes I tell her that my asthma feels worse, the tightness in my chest is worse than usual and she says, "Oh that’s not asthma, it’s just shortness of breath."  I don’t understand the difference and that frustrates me.  Maybe if there was some way better to explain exactly what the difference is. Dianne

Response:

:Rather than answer a question, I would just like to make a comment.  I :have always had the most trouble distinguishing between asthma and what my :doctor calls "shortness of breath".  Sometimes I tell her that my asthma :feels worse, the tightness in my chest is worse than usual and she says, :"Oh that’s not asthma, it’s just shortness of breath."  I don’t understand :the difference and that frustrates me.  Maybe if there was some way better :to explain exactly what the difference is. That sounds like BS to me. That sort of doctor responds well to objective measurements; do you measure your Peak Flow? If so, and if during these episodes it is down (as I would guess) I expect that she would/might be more sympathetic. If not, change your doctor! Barry Landy                        Computer Laboratory:+44 1223 334600 Head of Systems and Development    Direct line:        +44 1223 334713 University of Cambridge Computing Service Pembroke Street, Cambridge CB2 3QG

Response:

Dear Dianne, I don’t understand your doctor’s reply and suspect that she doesn’t understand asthma.  Has she ever measured your lung function or suggested that you measure your own lung function with a peak flow meter? Ken – Hide quoted text — Show quoted text -Rather than answer a question, I would just like to make a comment.  I have always had the most trouble distinguishing between asthma and what my doctor calls "shortness of breath".  Sometimes I tell her that my asthma feels worse, the tightness in my chest is worse than usual and she says, "Oh that’s not asthma, it’s just shortness of breath."  I don’t understand the difference and that frustrates me.  Maybe if there was some way better to explain exactly what the difference is. Dianne

Response:

Tim Brookes   Department of English, University of Vermont PO Box 54030, Burlington, VT 05405 (w) (802) 656-4162 (h) (802) 878-2251 "If it was easy, it wouldn’t be interesting." The most frustrating thing that I have encountered as an asthmatic is that many people think it’s all in your head.  Even if you go to a regular doctor, you are not taken seriously.

Thanks for responding to the survey. Can you be more specific about not being taken seriously?  When my asthma flares up, I cannot breathe and talk at the same time, so it’s impossible to communicate the problem myself.  I’m lucky that my husband is supportive and intercedes on my behalf.  I am now going to a specialist.  Even as a child, my parents and relatives thought my attacks were to get attention.  I read an article in a magazine a few years ago which supported "The all in your Head" theory.  I felt that article was damaging because it might make a parent of an asthmatic ignore the problem and not get help.  

Tim

Response:

Tim Brookes   Department of English, University of Vermont PO Box 54030, Burlington, VT 05405 (w) (802) 656-4162 (h) (802) 878-2251 "If it was easy, it wouldn’t be interesting." Hey!  This is amazing that I found your survey randomly while trying to search out info on asthma as I _randomly_ found your narrative at the library last week.  And I’m right now in the midst of reading it — and I can’t believe how much I identify with your experience.  Asthma, along with my 3 inhalers and yearly short-term stintch with Prednisone, have become a normal and never-departing part of my life for half of my life. (I’m 24).  Asthma, at times, esp. in the spring/summer, has such a grasp on me that I have to limit so much of my activities!

In THEORY at least, your asthma should be controllable to the point where you can lead pretty much the life you want to lead. It sounds as if there’s still some more chance for improvement…   Doctors have not been very helpful — just giving me more drugs.

….which leads me to wonder about this point. I’m not sure if you’re saying that the drugs don’t help, or you don’t take them, or you’d rather not take them…. These are big issues, and above all it sounds as if you’re not getting very good and helpful *explanations* along with the drugs.  I am wanting my friends and family to read excerpts from your book, as you’ve put into words what I’ve been thinking and feeling for so long.

That’s very kind of you to say so.   So, just want wanted to say "thanx" and I’ll try to get that survey answered ASAP.  By the way, do you have any information on where in the United States is the best place to live, esp. for seasonal asthma sufferers?

That’s a tricky issue. It is generally thought that wherever you live, you’re likely to develop some allergies; but having said that, it’s clear that some elements will make a difference. If you have mold allergies, a drier climate will probably suit you better, and there are studies that show how the Pacific Northwest is, not surprisingly, hardly the healthiest place for such people. On the other hand, individual cities have temperature-inversion smogs which are just awful (L.A. and Fresno, for example), and some rural areas are heavily drenched in pesticides. For me, moving 11 miles has made a difference: when I lived in Burlington my general allergies activity was very moderate; when I finally could afford to buy a small house, the only place I could afford to buy was outside town, and this valley is just full of mustard grass and ragweed and various pollens; the first night I spent here, I lay awake wondering how soon I could afford to move! So it all depends on some very specific variables as well as (and possibly even more than) a general sense of geographic area. Even in the cleanest and healthiest area, a moldy basement will cause trouble if you’re allergic to molds. Best of luck, and thanks for writing, Tim   Jill

Response: